Diagnosed at 41 years old

Gina2316

In TEXAS & New to the Group

We started taking my sister to the doctors about 2 years ago because her signs of memory loss were getting worse and she was now starting to have trouble with her speech. Just a few months ago we finally found a geriatric dementia doctor to accept her as a patient. No one would take her because of her age. So we are hoping this doctor will be able to figure out which type of dementia we are dealing with. All the previous doctor just document it as unspecified dementia.  She’s unable to read properly, can’t write and doesn’t even remember her own birthday. She has difficulty following one step directions. I’m afraid that it’s just a matter of time where she won’t be able to verbally express herself and that’s when she will really fall apart. Most of the time she’s happy & in good spirits but there are those moments of frustration where she shuts down and starts crying, but it usually passes pretty fast and she’s back to herself. So for the past 2 years and up until about 2 months ago we as a family were all taking turns staying with her during the day while her husband goes to work. (because there are still children in the home)  So now I’m trying to figure out how to get funding for  her to have home healthcare and possibly get  her 20 yr old nephew( my son)  hired to be her permanent caretaker since he decided to quit his job almost 2 months ago to help with my sister. Anything to get us in the right direction. 

eaglemom

Welcome to the message board Gina2316. I'm glad that you've found us. If you will look at the top of this page you will see a section called solutions. If you will click on it it will bring up various topics to choose from. You will find good information there.

It can be very frustrating, as you well know, to seek out a diagnosis on a younger person. You have to become their best advocate, which it seems you have. It is all very overwhelming.  When you make appointments / calls on your sister's behalf document it by keeping a notebook of whom you spoke with, etc. Make sure to date it also. Have you contacted your local ALZ Chapter? They possibly could offer virtual support group. (I am in TX and we attend several virtual support groups hosted by the ALZ Assoc.) 

Never hesitate to call the ALZ Help Line 800-272-3900.  The phone is answered 24/7. Ask to speak with a care consultant.

It is wonderful that your family offers your sister the support she is receiving. Your BIL needs to make certain all the paperwork is up to date, and certainly needs to see an elder care attorney ASAP. This is vital since there are children in the home.

Has the geriatric doctor done any testing? Has that office offered any guidance or put your sister on any medications? 

I was to applaud you for all your doing for your sister. I would hope that your BIL is involved and appreciates everything that is being done for his wife.

eagle

[Deleted User]

The user and all related content has been deleted.

Gina2316

Thank you I’m glad to be here. The neurologist we seen prior to going to the dementia clinic has put my sister on Aricept 10mgs and she takes vitamin B1 and B12.  They had her take a Neurological Cognitive Test a few weeks ago and we go back for the results later this month. She did one last year at the behavioral clinic so they will compare the result to one another to see if she’s or how much she’s declined. What exactly does an elderly care attorney do. No one has mentioned that before. Yes BIL is involved and very appreciative of everything our family is doing to help.

Cynbar

The elder law attorney will advise your sister and BIL on what legal documents need to be in place, such as a will and a durable power of attorney or health care proxy --- these differ somewhat state to state. Don't wait too long, as at some point she will not be mentally competent  to sign documents. In addition, the attorney will advise them on Medicaid planning. This is complicated, it involves qualifying your sister while protecting as much of the assets as is legally possible for the rest of the family. She may require placement at some point, plus Medicaid would open up more services for her. In general, ongoing home health aide help is not provided for custodial patients (meaning no acute medical needs) except for Medicaid recipients. However, your BIL should ask their health insurance company if they will provide any assistance. And, generally Medicaid is the only way to get payment for an in home caregiver --- some grants are available for some care but not enough to cover an ongoing schedule. 

Good luck, this sounds like an incredibly difficult situation for all of you.

Gina2316

The hospital we used is a teaching hospital JPS but the neurologist is the one that recommended we find her a dementia clinic. The clinic is at UNT health and science center and her doctor specializes in this field. Her primary dr from JPS sent us information to be a participant in a dementia study but when I called they said my sister did not meet the age requirement. 

She needed to be in her 60s it was very difficult to even get her in the clinic, but thank God she was approved to be a patient because again the clinic is a geriatric dementia clinic & I couldn’t even get past the operator once they asked for my sisters date of birth... 

But we are managing & just taking it as it comes One Day at a Time 

Gina2316

I was referred to Texas Legal Service Center and the the area manager email a whole packet of several different documents we could fill out ourselves & get notarized. So we did the Medical Power of Attorney form as well as a TODD (Transfer of Death Deed) & submitted that to the the county clearly office to file in public records or something like that. and also added  her son as a beneficiary to all her accounts. But thank you I will contact an Elder law attorney to see if there is anything else we should do.